Looking for hope

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Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Looking for hope

Postby Husbandworried » Fri Nov 12, 2021 10:04 am

Sitting waiting for wife to come out of latest scan. Her story started February 2019 had emergency surgery and found colon cancer at 48 years old. Stage 2a T3N0M0 12 lymph node negative had 5 fu 12 rounds CEA all <0.5. 2 negative CT scans then August 2020 CT scan showed hydronephrosis and CT shoes small nodule on urerter. Pet scan showed nothing lighting up except possible nodule. Surgery October 2020, negative margins surgeon said 50/50 chance of cure oncologist said slightly better than 50/50. Article showed maybe 60/40. Did 12 rounds of folfox left with neuropathy. Ct scan in august 2021 clean, now at act scan in November. Cea <0.5 in august in November was 0.5. I am scared beyond belief but trying to be supportive, looking for anything positive.

boxhill
Posts: 756
Joined: Fri Apr 06, 2018 11:40 am

Re: Looking for hope

Postby boxhill » Fri Nov 12, 2021 1:18 pm

Has your wife had genetic testing of her tumors?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
6/20 Stop Key
All MRIs NED

Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Re: Looking for hope

Postby Husbandworried » Fri Nov 12, 2021 7:17 pm

Microsatalite status equivocal
Tp53 mutation

Everything else was negative

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Looking for hope

Postby JJH » Sat Nov 13, 2021 1:32 pm

Husbandworried wrote:Microsatalite status equivocal
Tp53 mutation

Everything else was negative

Understanding Your Positive TP53 Genetic Test Result
https://www.ambrygen.com/file/material/view/1039/UYR_TP53_Positive_1018_Final.pdf?dl=1
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Re: Looking for hope

Postby Husbandworried » Sat Nov 13, 2021 10:40 pm

Sorry I misread genetic testing TP53 was negative

boxhill
Posts: 756
Joined: Fri Apr 06, 2018 11:40 am

Re: Looking for hope

Postby boxhill » Sun Nov 14, 2021 9:22 am

Equivocal MSS/MSI? That's a new one on me. Seems to generally be a result of testing failure because of poor sample or something like that. Can you delve into that more? What was equivocal about it? Not sure about dMMR/pMMR? Something else? MSS with high TMB maybe?

Being responsive to immunotherapy would definitely be huge. If it were me I would insist on retesting with a fresh sample, and I would pay for it myself if necessary. It doesn't have to be Foundation One.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
6/20 Stop Key
All MRIs NED

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Looking for hope

Postby JJH » Sun Nov 14, 2021 9:56 am

Husbandworried wrote:.... Surgery October 2020, negative margins surgeon said 50/50 chance of cure oncologist said slightly better than 50/50...

More information needed: What kind of surgery was actually done in October 2020? What did the pathology report for that surgery say about the nodule? What kind of nodule was it, benign/malignant? Where was the nodule located: inside the ureter, or on the outside of the ureter? If the nodule was malignant, then what was its grade? Was this nodule considered a second primary cancer (e.g., a urothelial carcinoma), or was it considered a recurrence of the original colon cancer (i.e., an adenocarcinoma)?

If the surgery does not provide a cure, then what is expected next? Another urothelia carcinoma in the ureter? A urothelial carcinoma in the bladder? A metastasis to some other part of the body? It's not clear what the danger is and why the danger is so high, given that the surgical margins were all clear.

Why are they testing for CEA if this is a uretral cancer? CEA is for colon cancer, not for uretral cancer.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Re: Looking for hope

Postby Husbandworried » Sun Nov 14, 2021 10:35 am

Equivocal 7.9 mutations /mb 54.5 percentile

Surgery October 2020, mass 2.4cm x1.7x 1.7 cm on outside of urerter consistent with adenocarcinoma CRC urerter margins clear

Had full genetic screening panel done as part of study no additional mutations found

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Looking for hope

Postby JJH » Sun Nov 14, 2021 5:00 pm

Still a lot of information missing: Was the original colon tumor on the left side of the body or on the right side? Was the second tumor on the left ureter or on the right ureter? How close was the second tumor to the location of the first tumor? If they were on the same side and in the same general region, this could be considered a "local recurrence" and could suggest a poor initial emergency surgery.

What kind of surgeon performed the emergency surgery? Was he/she a qualifed colorectal surgeon or some other kind of surgeon? Is it the same surgeon who did both surgeries?

Has your wife ever had a colonoscopy? If so, what were the results of that? Did they do a biopsy then?

Does your wife have copies of both surgery reports? Does your wife ask questions at the meetings and does she take notes? Does she remember what the doctors said?

There's still a lot of information missing. Not enough information given to tell what is going on. Has you wife thought about getting a second opinion of her case by another medical team?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Re: Looking for hope

Postby Husbandworried » Sun Nov 14, 2021 8:26 pm

Sorry I’m new at this I will try to fill in

Original surgery was emergency surgery for blockage done by general surgeon. Tumor on left side of colon. Second surgery done at cancer center by colon cancer surgeon and a urologic cancer surgeon . Urerter was the left side as well. Not sure how close but both on left side and in same general area I think. Had a second opinion after both first and second surgery. Had a colonoscopy before reversal of colostomy about 10 months after first surgery everything at that time was fine they did biopsy at that point as well and also removed her ovaries and tubes as a precaution.

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Looking for hope

Postby JJH » Mon Nov 15, 2021 12:17 am

Thanks for the update. This is getting more and more complicated and more and more confusing (to me) with each iteration. So, your wife had at least 4 surgical procedures done, maybe some of them done on the same day. Can you give the dates (month, year) of: 1. the emergency surgery 2. the colostomy reversal procedure, 3. the ovaries/fallopian tubes surgery, 4. the ureter tumor surgery?

Also, in the same sequence, can you give the start/stop dates (month, year) of the chemo regimens?

And what were the results of the most recent CT scan, and was it a full thorax/abdomen/pelvis scan done "with contrast"?

And where did your wife get the second opinions done? At the cancer center, or at a different place?

Has your wife asked whether the ureter tumor was a "local recurrence" vs a "remote recurrence"? Has she asked whether or not the ureter tumor was actually a malignant lymph node?

Sorry for all the questions, but there are still a lot of issues that need to be clarified. Thank you.


boxhill wrote:Equivocal MSS/MSI? That's a new one on me. Seems to generally be a result of testing failure because of poor sample or something like that. Can you delve into that more? What was equivocal about it? Not sure about dMMR/pMMR? Something else? MSS with high TMB maybe?

Being responsive to immunotherapy would definitely be huge. If it were me I would insist on retesting with a fresh sample, and I would pay for it myself if necessary. It doesn't have to be Foundation One.

    There are two approaches to assessing MSI status: IHC testing, and PCR testing. They give equivalent results, but in different formats.

    If the MSI test that they did was "equivocal" they could do another test with a different tissue sample, and they could use the same approach or the alternate approach to testing. In my opinion, there is no excuse to accept an "equivocal" finding. They should persevere until they get a good result that is unequivocal.

    MSI status is required for all CRC diagnoses and is an important part of the overall diagnosis and treatment scenario.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Re: Looking for hope

Postby Husbandworried » Mon Nov 15, 2021 6:52 am

Emergency surgery feb 2019
1st round of chemo March 2019 thru sept 2019 5fu

Reversal surgery with ovaries removed was one surgery In November 2019.

Had clear CT scans (chest and abdomen with contrast) in October 2019, February 2020

CT scan in August 2020 showed nodule on urerter that turned out to be malignant

Surgery October 2020 to remove nodule, surgeon felt it may have been a lymph node they felt it was distant as they used stage 4 I. Conversation.

Second opinion was at cancer center with colon specialist.

Last CT was of chest and abdomen with contrast on 11/12/2021 have not heard anything as we have appointment with oncologist on 11/17/2021 as her usual 3 month visit and to go over scan.

Husbandworried
Posts: 8
Joined: Fri Nov 12, 2021 9:54 am

Re: Looking for hope

Postby Husbandworried » Mon Nov 15, 2021 6:53 am

Sorry 2nd round of FOLFOX was from December 2020 thru June 2021

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Looking for hope

Postby JJH » Mon Nov 15, 2021 11:47 am

2019 FEB Emergency surgery for obstructive tumor in the descending-colon/sigmoid-colon area: Hartmanns procedure + temporary colostomy
2019 MAR Month 1 of 5FU - Start of adjuvant therapy for DX Stage 2a T3N0M0
2019 APR Month 2 of 5FU
2019 MAY Month 3 of 5FU
2019 JUN Month 4 of 5FU
2019 JUL Month 5 of 5FU
2019 AUG Month 6 of 5FU
2019 SEP Month 7 of 5FU - End of adjuvant therapy for DX Stage 2a T3N0M0
2019 OCT Rest interval between chemo and reversal surgery. Clear CT scan (chest and abdomen)
2019 NOV Reversal surgery with anastomosis, plus preventive ovarian/fallopian-tube surgery
2019 DEC Start of 5-year surveillance period, for DX Stage 2a T3N0M0
2020 JAN Surveillance
2020 FEB Surveillance -Clear CT scan (chest and abdomen with contrast)
2020 MAR Surveillance
2020 APR Surveillance
2020 MAY Surveillance
2020 JUN Surveillance
2020 JUL Surveillance
2020 AUG Surveillance - CT scan showed nodule on outside of left ureter that turned out to be malignant
2020 SEP Surveillance - New diagnosis, DX: mCRC (Stage IV equivalent) + New treatment plan.
2020 OCT Surgery to remove malignant nodule near left ureter (surgeon felt it may have been a lymph node)
2020 NOV Rest interval between surgery and 1st line mCRC chemo
2020 DEC Month 1 of FOLFOX - Start of 1st line chemo for DX mCRC (Stage IV equivalent)
2021 JAN Month 2 of FOLFOX
2021 FEB Month 3 of FOLFOX
2021 MAR Month 4 of FOLFOX
2021 APR Month 5 of FOLFOX
2021 MAY Month 6 of FOLFOX
2021 JUN Month 7 of FOLFOX - Pause of 1st line chemo for DX mCRC (Stage IV equivalent)
2021 JUL Chemo break, surveillance
2021 AUG Chemo break, surveillance
2021 SEP Chemo break, surveillance
2021 OCT Chemo break, surveillance
2021 NOV Chemo break, surveillance, CT scan (chest and abdomen with contrast) on 12 NOV
2021 NOV Chemo break, surveillance, meeting with oncologist on 17 NOV for scan review.
2021 DEC What's next? Restart chemo? Switch chemo? Stop chemo? . . .

If your wife needs any help before her Wednesday meeting with the oncologist, just let us know. Good luck!
Last edited by JJH on Tue Nov 16, 2021 9:50 am, edited 1 time in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

boxhill
Posts: 756
Joined: Fri Apr 06, 2018 11:40 am

Re: Looking for hope

Postby boxhill » Mon Nov 15, 2021 7:12 pm

If the MSI test that they did was "equivocal" they could do another test with a different tissue sample, and they could use the same approach or the alternate approach to testing. In my opinion, there is no excuse to accept an "equivocal" finding. They should persevere until they get a good result that is unequivocal.


JJH I think that at the 11/17 appointment they MUST clarify the MSS/MSI status.

It seems likely that the tumor was pMMR, but there was another site of instability, which would make the tumor MSI-low. Everything I've seen says that if the result is equivocal, the test should be repeated with the other method.

It is difficult to imagine that in this day and age they would not retest at least at the point that she developed a met.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
6/20 Stop Key
All MRIs NED


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